Eating panda

Fact from the Down Syndrome Association: 1 in 691 births in the United States are affected by Down syndrome, making it the most frequently occurring chromosomal condition. Yet despite its frequency, Down syndrome is the least funded of the conditions serviced by the National Institutes of Health receiving approximately $17 million out of a total $28 billion budget.

A few years back, BBC presenter and well-respected naturalist Chris Packham drew serious heat when he said he would “eat the last panda if I could have all the money we have spent on panda conservation put back on the table for me to do more sensible things with.”

Advertisements

Meet Rafe…

Today I had the pleasure of learning about a young man named Rafe Day, who works as a lab technician and “parts dude”  for a research lab at the University of California, Irvine. (Nice feature profile of him here: http://www.uci.edu/features/2010/03/feature_day_100308.html).

Rafe has also participated in the NASA-sponsored Student Aircraft Research Program. (Article here: http://www.nasa.gov/centers/dryden/education/rafe_day.html).

There’s even video of Rafe operating the Whole Air Sampler on NASA’s DC-8.

Technician Rafe Day – also known as the “Parts Dude” – prepares for an air sample analysis using liquid nitrogen in chemistry chair Donald Blake’s lab. (Michelle S. Kim / University Communications)

His friend Jane emailed me today to share a bit of his story. She described him as one of the most “insightful people” she’s ever met, and a “joy to have in our group”.

After reading about him, I’m sure you’ll agree, he has accomplished much in his life, and really touches the hearts of those he comes in contact with…oh, and I didn’t mention it, but Rafe has Down syndrome.

Rafe should be a reminder to every parent of a child with Down syndrome; keep your chin up and never stop believing…the future for individuals with Down syndrome holds unlimited opportunities, no matter what you may have heard.

Just reading about this young man made my day! Sounds like he has so much to offer and great people surrounding him. Quite inspiring!

Something Is Rotten in the State of Denmark

Uck. Saw this on a random website and I really hope it’s not true:

“…Denmark proudly proclaimed that it would soon be the first Down Syndrome-free nation in the world. Its official Web site stated:

“A medical review from 2002 of elective abortions in the UK and the US found that around 92% of all fetuses diagnosed with Down Syndrome were aborted. In Denmark, medical experts estimate the rate of abortions to be even higher. If the current trend continues, it is predicted that the last Down Syndrome baby in Denmark could be born in 2030.” (www.mercatornet.com)

Really? Eliminating people with Down syndrome is an achievement?

Denmark, you are missing out.

I’d much rather see a nation composed entirely of individuals with Down syndrome! I’d want to move there.

Sure, there would be grumpy quarrels sometimes; a sudden change in plans or a forgotten promise, and suddenly everything in this magical Ds land might come to a screeching halt: “Negotiations broke down when the parties decided to stage a sit-down protest with their arms folded and a firm head shake.” But everywhere you turned there would be amazing things.

The National Association for Down Syndrome has this on their site and it’s funny and so true. Why would any country want to eliminate this from happening?!

If people with Down syndrome ruled the world:

Continue reading

Why are you always talking about Down syndrome?

For the last 6 years, Down syndrome has been a part of my life, every day, all day.

Since completing my book “What I Want You To Know”, I’ve been blogging, tweeting, facebooking, you name it, Down syndrome related news stories and information. And while seeking out these stories and news pieces is hardly a new thing for me, sharing them is.

I realize that so many people may not read every story. Most people won’t read any. But I’m going to continue to beat this drum, and here’s why.

In thinking more and more about why I wrote that book, it was because of the fears and worries I had as a new parent of a child with Down syndrome. Fear–a fear of the unknown. This whole segment of our population that has Down syndrome is relatively ignored and forgotten. I’ve read statistics that around 75% of women who learn they are carrying a child with Down syndrome terminate the pregnancy. Before passing judgment on a person for doing this, I know that the main reason for this decision is fear. Whether they fear that the child’s quality of life is lessened, or the stigma, or the added expense or raising a child with special needs…these reasons are all based in fear.

By sharing stories about individuals with Down syndrome, hopefully some people will be reached and learn that people with Down syndrome are doing some amazing things; making a difference in their communities, whether it’s winning a school homecoming crown, running a business, excelling at sports, modeling, etc, the point is that they are doing pretty normal things. Look at them. Get used to seeing them. Past generations locked them away in institutions, but today, individuals with Down syndrome live and work among us, and that’s worth sharing.

The more we see just how typical and normal their lives are, the more they will become so, and hopefully some of the fears will be lessened, and more will survive the womb.

I don’t want to say at all that having a child with Down syndrome won’t change your life. It will. It will change everything. But just in the most wonderful ways that you can’t even imagine. It will change your heart. It will open your eyes. You will never regret knowing or loving a person with Down syndrome, and you can’t say that about just anyone!

So I will continue to harp on this. My youngest daughter will always have Down syndrome. I owe it to her to try to share stories that remind folks people like her exist and need all of us to respect them as individuals and see past the stereotypes or our own fears or preconceived ideas of who or what they are.

Faith is queen!

Here’s a great story I have to share…followed by a little background:

February 8, 2013 — Irondale’s Ice Age week featured the coronation of student royalty in an afternoon pep fest assembly Friday, February 8. In a vote determined by their classmates, seniors Bruce Matusovic and Faith Barnier were selected as Ice Age king and queen.

Both students participated on the adapted soccer team that went to the state tournament last fall. Bruce is the team captain of the adapted floor hockey team, and Faith plans to play on the adapted softball team this spring.

“Bruce and Faith are wonderful students and very well-liked by their classmates and the entire school community,” said Irondale principal Scott Gengler. “It was a thrill for our school to see these two students receive this honor.”

Here’s some fuzzy but spirited video.

Continue reading

The last acceptable discrimination

Let me start by saying Michael Garcia should be applauded. He did a brave and difficult thing. At the risk of potentially losing his job, he stood up to some rude customers who refused to sit next to a child with Down syndrome. Thank you Michael Garcia.

(Full story here: http://rt.com/usa/news/waiter-syndrome-special-garcia-056/ )

But as the parent of a child with Down syndrome, I’m left wondering a few things that I should write down…maybe it’ll help me sort it out.

Ok, what the hell is wrong with people? Really? Afraid you are going to “catch” Down syndrome? That extra chromosome is going to leap from the child to you, and you might wake up tomorrow with a scratchy throat, Brushfield spots, and Epicanthal folds?

Continue reading